OK thanks.  So regarding ALT/AST, how did your levels respond over the course of treatment?

Hey Paul,

It's no big deal. You are obviously doing very well and I would be confident. I'm just interested in Riba, as it was critical for me, but caused the worst side effects. Onward to SVR!

I hope this is not pointing to failed tx.  I may find three failures difficult to deal with.

Hi Paul,

I'm just interested in your response to Ribavirin. The MCV (Mean Corpuscular Volume) typically increases with the Riba anaemia. Yours is normal (normal range 80-100) whereas mine was >110 throughout treatment. I guess it depends on the individual. Thanks.

Hey Mal,

MCV is 91.  I have no idea what that is,

Hi again Paul,

The AST/ALT ratio is one of those 'soft' markers for cirrhosis. If > than 1, cirrhosis is likely.

Your Neutrophils are holding up, together with the platelets. Your Hb has dropped a bit more- have you got the MCV? It may drop a bit more. Struggle on- it's worth it.

mallani wrote:

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Hi Paul,

You're doing well. Just as an aside. The ratio of AST:ALT is quite useful in diagnosing cirrhosis. It is normally <1, but if consistently  >1, cirrhosis is likely. Keep trucking. Cheers.

 

Thanks Mal,

 

can you explain how that translates to my results? I am guessing that it confirms cirrhosis.

As another aside, I note my Hb is still trending down.  Maybe just at a lesser rate of decline than usual?

 

Cheers,

Paul

 

 

 

 

 

 

 

 

 

 

 

 

-- Edited by mallani on Saturday 6th of September 2014 12:26:52 AM

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Hi Paul,

You're doing well. Just as an aside. The ratio of AST:ALT is quite useful in diagnosing cirrhosis. It is normally <1, but if consistently  >1, cirrhosis is likely. Keep trucking. Cheers.

Hey Tig, thanks.

Week 13 blood tests today.  Hb  - 135.  Platelets  - 90. Neutrophils .7.  WCC - 1.9. RCC - 4.46.

ALT 39 & AST 47 still normal since first tx results at week 4.

Hi Paul,

Boy, do I remember those days! I also found myself glued to my chair and watched lots of movies and TV. I would watch mood related programs, action films on those days I was angry at the situation (blow something up) and comedy on the days I felt down in the dumps.  I also spent a lot of time on this forum. The people have changed, but the caring nature of the crowd is much the same. Because of the global reach we have, there seems to always be someone available to talk and I recommend it highly. As Malcolm suggested, exercise when you have the strength, even 5 minutes up and down a stairway will keep things moving. 

Hang in there Paul! The journey is wrought with bumps and rough patches, but the finish line and SVR are smooth and worth achieving! Good luck Brother....  

Tig

Thanks Mal,

I am getting about 3-4 walks in each week to try and avoid stiffening up... other than that, I mainly surf the net or read.

Thanks for the encouragement, I do find it very helpful.

Hi Paul,

I know how you feel mate. One day at a time..........

Try to do some exercise. I hardly left home, and sat watching TV all day. This led to severe muscle wasting and joint stiffness.

Every lot of pills takes you closer to SVR. That's all to think about at the moment. Cheers.

Same every day.  I feel crap and wonder how I will ever get through this.  Then I take my pills...

Unexpectedly, the thick and persistent psoriasis patches on my knees and elbows have almost completely cleared during tx.  I have had them for years, I can't remember when it first became evident but maybe after tx back in the 90's.

Hi Paul,

Great stuff! You're on your way to SVR. Cheers mate.

Week 10. Undetected.

Thanks guys I really appreciate the support. I have been keeping the fluids up given I reckon this crap has a dehydrating effect on the system.  After the hell anemia I went through last time I reckon I am due for a lucky break and I am milking it for as long as it lasts !!!

Yea Mal... the pill burden is worthy of a novel... it is just epic.  And as far as dose reduction is concerned, that is certainly not part of my agenda, which I made quite clear to the nurse at today's clinic. But given they made such a fuss regarding potential neutropenia, and indicated that their point of concern was at .7, I was very surprised when the nurse made no reference to the subject today.

Had PCR test today so waiting on that result.

Hi Paul,

Treatment's being kind to you. I'm amazed at your Hb. The platelet and Neutrophil drop is due to Interferon, and you don't want to drop that dose.

Make sure you get the 12 week VL, so your RVR can be confirmed. Are you getting tired of the pill burden yet? Cheers.

Hi Paul,

You're right, the numbers are looking pretty good. The drop in white count and platelets are to be expected. Your Hb is quite remarkable but my experience with the anemia you will/are experiencing from the Victrelis and Ribavirin will eventually take it's toll on you regardless of your aerobic fitness level. I'm sure that is helping you handle the body slam the drugs are delivering right now, but your body will in time surrender to the anemia. Stay rested, eat a healthy diet and hydrate like there is no tomorrow! Keep up the great job, you're doing very well! Good luck!

Tig

Blood tests today.  Hb stable  - 142.  Platelets continue to drop - 91. Neutrophils .5.  WCC - 1.7. RCC - 4.74.

ALT 34 & AST 38 still dropping and have been normal since first tx results at week 4.

The fact that my ALT & AST normalised so early and actually continue to trend down gives me great encouragement.  Last treatment (1998) they normalised at the start and shot back up a week later.

Also my neutrophils continue to nosedive.   Very happy to see that and surprised the nurse didn't start talking dose reduction. She did say she would mention it to the gastro but my next appointment is not for another 3 weeks and by then I will be at end of week 13.

I had a discussion regarding Hb given that it is not dropping.  My nurse is of the opinion that my very high level of aerobic fitness has had an influence on that.  I agree.  Every other indication, particularly the RVR at the lead in would indicate that tx is working.

Feeling slightly crap but happy with the numbers.

Hi MzmiffY,

5 months in...  that is a pretty good effort.  It's a tough gig that's for sure. Hb level must leave you feeling a bit ordinary.  I guess your gastro knows enough to advise you, meds twice a day would make the process a little more tolerable for sure.  I am a slave to correct procedure and would be unable to deviate from the manufacturers recommendations   Anyhow, hope it all continues to go well for you.

Hi Tig,

My Dermatologist told me the anti-dandruff shampoos dry out the skin and advised me to only use baby shampoo. It made sense at the time. If you had some relief, he was probably wrong.

I didn't really have much problem with the rash. It mostly appeared on my trunk, and disappeared after the 0.5% triamcinolone (cortisone). It would reappear a week later. What fun it all was!

Hey Malcolm,

Im curious why you advised against the anti dandruff shampoo? I used the Head and Shoulders  "Refresh" brand of the product, it has a bit of menthol in it and it helped the itchy rash on my scalp tremendously. It also seemed to help relieve the itching I had from my abdominal rash. I also used a .5% HTC cream on the Riba rash, along with Zyrtec (Certrizine) for it's antihistamine action. Thanks!

Tig

Hi Paul,

Your skin problems are probably the 'Riba rash'. Although it typically affects the trunk and upper arms and thighs, it can occur anywhere. It's a fine, red, maculo-papular (bumps) rash with some vesicles and can be very itchy. Try some steroid cream. I used 0.5% triamcinolone. You may need an antihistamine for the itchiness.

Don't scratch, and limit showers to brief lukewarm water rinses. Don't use antidandruff shampoos and stay out of the sun. A mild moisturiser like 'Nivea' is OK. Grow a beard!

Hiya paul

I was on the other triple (incivek). You have to try not to scratch that rash it will just make it worse. I was undetectable at 4 weeks but my doc and I decided to go the whole 48 just to have the best chance at SVR. Find stuff you don't mind eating. Lots of time I had to force myself to eat. It was a long road but when I look back its like a bad dream. It was worth it. Hang in there buddy.

 Maybe my regime of 300kms per week of intense cycling prior to treatment has something to do with Hb levels dropping off a bit slowly. Feeling weaker as treatment goes on and my next blood tests on the 19th will be interesting.

Something I have not mentioned is this significant rash.  It extends from my forehead into the scalp.  Covers either side of my nose, the sides of my face and under my chin.  I am not shaving at the moment but give it a super close clip once a week.  The rash under my chin gets itchy and I scratch it which causes it to bleed.  I am playing it down at the clinic as I don't want them to start talking about dose reduction.  The skin on my face is flaky as well.  And to top it off, I am looking really tired and aged.

Hi Paul,

Obviously Interferon is doing it's job, and the platelets and WCC suggest good response. I would have expected a bigger fall in Hb by now- perhaps Riba isn't working as well. A Hb of 142 is normal for many people.

Although it's tempting, don't read too much into the shortened protocols. Remember you're cirrhotic and need long term exposure to the drugs. Perfusion of a fibrotic liver is poor. Cheers.

Blood tests today.  Hb down again - 142.  Platelets continue to drop - 100. Neutrophils .9

ALT and AST still in the normal range.  I'm already way in front of where I was when I failed treatment in 1998 !!!

Had an interesting conversation with the nurse.  I told her about a paper I read where triple therapy (Victrelis) was carried out on two groups for durations of 12 and 24 weeks.  The prerequisite for inclusion was RVR @ 4 weeks.

Both groups achieved a high percentage of SVR.  So based on that I commented that it is possible that I may actually be cured after 12 weeks (not that we would ever know since I am not planning on stopping at that point).  The nurse then told me that she had patients who had to stop treatment at week 12 due to adverse side effects  and that some had achieved SVR.  It was no surprise since I had read the research but it was nice to hear a first hand report.

Anyhow, I am still mostly OK.  Feel a bit weaker but not doing as badly as I had expected.  Next VL load test in 2 weeks time which will be 10 weeks of treatment completed.  Naturally I am a bit nervous, but from the feedback I have received and based on my stable LFTs I am quietly confident I will still be neg at this early stage.

Thanks Mal,

My Vic schedule is 7am, 3pm, 11pm.  Rib 7am, 7pm.

Appetite is definitely down and my toughest meal is 7am.  I am having rasberries, banana, peaches, cashews and a probiotic drink.

So it seems that my initial reaction to Victrelis (I felt terrible 24-36 hours later), may have been just a speed bump.  The following day I feel fine.  The bad taste  and the feeling of weakness are both reduced.  Feel pretty much back to how I was which was pretty reasonable.

Hi Paul,

My Victrelis schedule was 6am, 2pm and 10 pm. The Ribavirin was 6am and ~7pm.

Victrelis should be taken with 'a meal or light snack'. I usually had a small tub of yogurt and a banana. All of the triple drugs cause appetite suppression, so it's hard to find something you like.

One good thing about the dysgeusia is that it cured my addiction to Diet Coke. I found the metallic taste to be foul, and still can't drink it.

What is the minimum I can get away with eating with this stuff ? 

Thanks guys.  I just don't feel like eating at all and I am noticing the fatigue straight off the bat.  I think the initial shock will pass and I will adjust to the new reality.  It is still way better than the last two times on treatment.  But then, that was 10 and 12 weeks respectively.  48 weeks looks like a long time.  But having said that, I am already in week 6.  So damn the torpedo's, full speed ahead!

Hi Paul,

i agree with Malcolm, get used to the changes in taste. I noticed a difference in everything I ate. I have always been a fan of spicy food and while on Tx, I had to stop the spicy stuff entirely. The heat from the spice was increased greatly and was nearly intolerable at times. Many things will have a metallic taste and that was very pronounced by the EOT. The fatigue increased as time went on, certainly due to the anemia. Expect some changes and learn to tolerate it as best as possible, good luck.

Tig

Hi Paul,

Welcome to the Victrelis dysgeusia. Get used to it, it doesn't change! You'll also notice a change in appetite- some foods will taste dreadful, and others will become tolerable.

I was fine during the leadin, and continued playing golf- the downhill slope started 2 days after I started Victrelis. Best of luck.

So the day after Boceprivir commencement. 

Brain fog seems more pronounced.

Feel like I have even less get up and go.

Bad taste in mouth.

Don't feel like eating at all.

That is it at the moment.  Does anyone relate to the above ?  Can I expect it to get worse or will my system become accustomed to the addition and settle down ?

It's actually not too bad so I really have nothing to complain about !